Ms Paddie Blaney:

I thank the Chairman and members. I am delighted to have this opportunity to address the joint committee on behalf of the All Ireland Institute of Hospice and Palliative Care, AIIHPC. The institute is a collaboration of partner organisations and a mixture of care providers and academic institutions from the Republic of Ireland and Northern Ireland, originally having 12 partner organisations but now numbering 14 and soon to be 17. This is a collaborative spanning all major hospice and palliative care providers and all nine universities on the island of Ireland. Palliative care experts from across the globe are collaborating with the institute. It is from this rich and diverse collaborative base that the institute seeks to achieve its aim, that is, an improved experience of care.

As requested by the committee, the scope of this submission is specifically focused on specialist palliative care. We ask the committee to note that the remit of the institute also embraces general palliative care provision in the wider health and social care settings as well as work with users, carers and communities to help achieve greater awareness, understanding and engagement.

The vision for the institute is that people across the island of Ireland living with a progressive or long-term illness experience the best care possible up to and including the very last days of their lives. Our vision recognises that this is a journey that may span a number of years, not just months. In this vision best care is synonymous with the goal of the best possible quality of life. The institute is helping to make this happen by working closely with all those involved to increase research, enhance education, create resources and influence policy.

Regarding increased research, initial funding has helped lay the foundations of a palliative care research network, the PCRN, on the island of Ireland. Eight research projects are under way aimed at addressing social justice aspects, better measurement and evaluation and looking at how to transfer learning from research into practice. Work identifying palliative care research priorities and exploring the application of technology sector solutions to meet palliative care needs is also under way.

The institute partners constituting all key players on the island affords opportunities to collaborate for high-quality, focused and meaningful research. The PCRN also affords excellent opportunities initially for European and international partnerships and ultimately becoming a global player in palliative care research and development. In terms of what is needed, it includes infrastructure support to ensure the basic research network architecture is sustainable; support to pursue research programmes; support to secure funding from European Union programmes and initiatives and to secure international and global partnerships; and funding to support early career researchers.

The right education is vital. We have worked with the Health Service Executive to identify palliative care competencies to underpin all undergraduate and postgraduate professional education. We have also worked with partner organisations to expand information on available education programmes both across the island of Ireland and internationally. We are working with hospice education providers to ensure more education is made available on a modern electronic learning platform. We have supported leadership development, all-island network developments and visits to exemplar sites across Europe and internationally, ensuring the learning is brought back to the Irish palliative care community.

In terms of what is needed, workforce planning must include funding for workforce development, that is, staff should be released to undertake development. Palliative care educators must be supported in their efforts to assist in the education and development of the general palliative care provision. There should be more support for the leadership development of palliative care practitioners at all levels and in all sectors.

Regulatory bodies should seek to ensure that palliative care principles underpin all undergraduate and postgraduate education programmes.

The institute is also working to develop resources and we are leading an initiative aimed at providing a modern communications and learning hub aimed at three main audiences, including palliative care professionals, adults receiving palliative care and children and young people receiving palliative care. All three audiences will be able to avail of education, skill building and awareness-raising programmes housed in a modern interactive learning platform. Co-ordinating one point of access to a myriad of palliative care information and provision will have profound benefits for all these audiences and establish a valuable resource. So what must happen?

Commissioners and providers of palliative care services within both jurisdictions must engage with and help resource this initiative. We would welcome government support for a wide marketing and awareness campaign in 2014, and opportunities should be taken at the national level to collaborate with the technology sector and ensure our populations might universally access this important resource.

The institute, representing the research, education, practice and policy interests of palliative care providers, is working to contribute to policy development and evaluation. The institute is inviting and facilitating discussions around key policy developments, trends and emerging issues on an all-island basis between the two jurisdictions, recognising that there is significant opportunity for synergy and possible joint policy drivers. Support has been given by ministerial colleagues in both jurisdictions for the institute to provide a presentation at a forthcoming North-South Ministerial Council. The institute should be included in policy and service developments so as to contribute, and where possible, align work activities with key national priorities. The institute could contribute to the Republic of Ireland’s World Health Assembly delegation, where appropriate, to help influence relevant WHO resolutions. It could be funded to undertake policy evaluation or strategy developments where required.

A palliative approach to care may be appropriate for many people across the age range, and for all of these people the goal of care is quality of life. We recognise that not all people who require it receive this type of care and many do not receive it early enough. In establishing the institute, palliative care leaders are hopeful that as our health care systems seek to provide the right palliative care resources in the right places and at the right time, the institute can support the quality and capacity of those specialist palliative care resources. We thank the committee for its attention and relay our best wishes on what we hope will be a productive series of hearings. We would be delighted to provide any further information that may help the committee in its deliberations.